1. < Autoimmune Diseases

Desperately seeking a Specialist for my Oral Lichen Planus

Posted by melanie3k @melanie3k, Jul 17, 2022

I've been treated for my Oral Lichen Planus with steroids, Hydroxychloroquine, Methotrexate and now Leflunomide. I have limited success and then I have a reoccurrence. I have no idea what retriggers the outbreaks but I'm not sure what to do. I've gone to the dentist. Who sent me to a dental specialist, who sent me to a rheumatologist, who told me to go back to the dental specialist. I'm frustrated and I have no idea what to do next. Are there any studies in the Baltimore area? I would be more than happy to take time off from work to be guinea pig. I'm desparate!

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petlover777 | @petlover777 | Jan 28, 2023

I have been dealing with esophageal lichen planus for a couple years. I'm currently being treated at UNC. I have it bad my esophagus was 4mm I was choking on everything and I was eventually dilated to 16mm aftet several dilutions. I'm currently taking hydroxychloroquine but it's not effective my throat is closing back up. I hope back in about a week, for another dilation and see my Dermatologist and will soon start Methotrexate I'm nervous and feeling defeated at this point.

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1 reply
steveandsteph | @steveandsteph | Jan 29, 2023
In reply to @petlover777 "I have been dealing with esophageal lichen planus for a couple years. I'm currently being treated..." + (show)
@petlover777

I have been dealing with esophageal lichen planus for a couple years. I'm currently being treated at UNC. I have it bad my esophagus was 4mm I was choking on everything and I was eventually dilated to 16mm aftet several dilutions. I'm currently taking hydroxychloroquine but it's not effective my throat is closing back up. I hope back in about a week, for another dilation and see my Dermatologist and will soon start Methotrexate I'm nervous and feeling defeated at this point.

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Have you tied going to Mayo?
I have decided if I encounter more problems, I need experts in this disease

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jshdma | @jshdma | Jan 31, 2023

For anyone dealing with OLP-- in my experience (since 2015) been to several high-level experts - NYC, Boston. There is NO solution to this. Sorry, but . . .

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vib70 | @vib70 | Apr 28, 2023
In reply to @melanie3k "Hi Colleen, Thank you. I was able to find a specialist who specializes in Oral Lichen..." + (show)
@melanie3k

Hi Colleen,

Thank you. I was able to find a specialist who specializes in Oral Lichen Planus at Johns Hopkins. I have an appointment later this month. I wish it was tomorrow.

Thanks again for reaching out to me.

If you hear of a study I'm your gal!

Respectfully,
Melanie

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Hi Melanie, I am also looking for a lichen planus specialist in the DC/Baltimore area. Would you mind sharing who did you find? When I look through the specialists at JHU I could not find anybody who mentions it in their profile.

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sadea0208 | @sadea0208 | May 6, 2023

Hi! I can empathize with you!I have Esophageal Lichen Planus which is extremely rare. The lichen planus is also in my mouth and skin. My mouth is very tender all the time and flares up a lot. I've lost 30lbs. It can be very difficult to eat! My mouth hurts all of the time!
I live in WA. State. The doctors and specialists in this area have never seen a case of esophageal Lichen Planus! The medications I have are steroidal mouth rinse and a Lidocaine oral medicine that numbs my mouth for a very short time.....15 -20 minutes. I continue to apply it for some relief.
I was an Oral Surgical Assistant for 30yrs. I have never had a patient with Oral Lichen Planus!! Dental work can really cause a terrible flare-up!
I so feel for you!❤️

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 6, 2023

@sadea0208 @vib70 @jshdma @steveandsteph
You may want to contact
https://rarediseases.org/. NORD National Organization for Rare Diseases
https://rarediseases.info.nih.gov/. GARD. Genetic and Rare Diseases
They are both excellent resources and can help find appropriate doctors in you area. They are also helpful in many other ways.
Will you call them this week and then tell me what you learn?

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rashida | @rashida | Mar 14 9:15am
In reply to @vib70 "Hi Melanie, I am also looking for a lichen planus specialist in the DC/Baltimore area. Would..." + (show)
@vib70

Hi Melanie, I am also looking for a lichen planus specialist in the DC/Baltimore area. Would you mind sharing who did you find? When I look through the specialists at JHU I could not find anybody who mentions it in their profile.

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Look for an oral pathologist.

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eclecticlz | @eclecticlz | Sep 2 7:58am
In reply to @colleenyoung "@melanie3k, I hope you've seen the helpful posts by @fdixon63 @rashida and @marye2. I see that..." + (show)
@colleenyoung

@melanie3k, I hope you've seen the helpful posts by @fdixon63 @rashida and @marye2.
I see that you are looking for a specialist recommendation in the Baltimore area. Have you considered consulting with someone at Johns Hopkins?

You might also be interested in this related discussion:
- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

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MELANIE, can you please tell me the name of the Doctor you found at Johns Hopkins. I am in DE & really need to find someone who specializes in treatment for Oral Lichen Planus.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 2 9:11pm
In reply to @eclecticlz "MELANIE, can you please tell me the name of the Doctor you found at Johns Hopkins...." + (show)
@eclecticlz

MELANIE, can you please tell me the name of the Doctor you found at Johns Hopkins. I am in DE & really need to find someone who specializes in treatment for Oral Lichen Planus.

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@eclecticlz If you look at my response just before Rashida’s, you will see the I mentioned two organizations that will help you find a doctor. Organizations GARD and NORD. Their websites are also great resources about autoimmune diseases. Give them a call!

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